The NIH autism data initiative is taking shape as the agency begins consolidating private medical records from both federal and commercial sources. This effort supports a new autism research program led by Health and Human Services Secretary Robert F. Kennedy Jr. NIH Director Dr. Jay Bhattacharya said the new platform will give researchers access to the most comprehensive patient data set ever used in autism studies.
Speaking to the agency’s advisers, Bhattacharya said current data systems are fragmented and difficult to access. He explained that agencies often pay multiple times for the same data, even within the federal government. This new initiative aims to reduce that waste by centralizing and streamlining access.
The new system will combine medication records from pharmacy chains, lab and genomic data from patients in the Department of Veterans Affairs and Indian Health Service, insurance claims, and data from wearable devices. Bhattacharya also confirmed that the NIH is negotiating with the Centers for Medicare and Medicaid Services to expand data access agreements.
The NIH also plans to launch a national autism registry. This registry will track diagnoses and integrate into the larger data platform. However, Kennedy’s description of autism as a “preventable disease” has drawn criticism from advocacy groups, who argue that such language is misleading and harmful.
NIH will award grants to 10 to 20 outside research teams. These teams will be selected through standard NIH peer-review procedures. Bhattacharya emphasized that only high-quality proposals will qualify for funding. The studies will explore a wide range of approaches, from basic research to applied treatments and public health strategies.
Bhattacharya acknowledged that autism affects people in very different ways. Some children function independently, while others face severe challenges. He stressed that the research will consider this diversity in its scope and methods.
To ensure data privacy, researchers will not download the raw medical records. Instead, they will work within a secure environment built with state-of-the-art protections. Bhattacharya believes this system will also support real-time monitoring for other chronic diseases in the future.
He called the initiative a transformative leap toward smarter, more coordinated health research. Although Kennedy previously predicted answers to autism’s causes by September, Bhattacharya now expects NIH to begin issuing grants by that time instead.
“Science doesn’t follow a schedule,” he told reporters. “We’ll move as fast as the evidence allows, but nature always has the final word.”
